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Multiple Sclerosis Message Board


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Don't beat yourself up by calling your emotional state a pity party! Many of us have been in your shoes.

I also was diagnosed with Fibro at 42 by a Rheumatologist. All symptoms mysteriously disappered about 6 weeks later. At 56, I went to my first neuro, had four brain lesions at the time. Diagnosis: CIS--clinically isolated syndrome--"unlikely to reoccur." Three months later, it did, along with numbness, brain fog, balance issues, numbing fatigue, sensory issues and etc.

Second neuro said (without examining me) "I think your Fibro is back!!!!)
Third neuro said maybe lupus, some other connective tissue disease, maybe cerebral artery disease, maybe Lymes. All tested negative.

Fourth neuro was an MS Specialist PHD--his expertise is MS. Diagnosed in two days with MRI, MRS and all my old MRI's and test results I had brought along to the appts. This took four years and I was diagnosed in two days by someone who knows his stuff, finally!

I know you want answers and help now. I was there too. It took me a long time to get over all the dismissals of my symptoms by these other neuros. You almost begin to believe their press instead of what you are feeling and experiencing in YOUR body.

It sounds like this neuro is very thorough, and is not dismissing your symptoms as imagined or stress or all the other excuses they can tend to give when they don't know the answers or do not feel confident to diagnose.

I now have only 10 brain lesions, and am doing well on Rebif. I started out with four------perhaps a more prompt diagnosis and treatment would have prevented the additional lesions but who knows. I just remember the months of feeling totally dismissed by these Docs, and starting to question my own sanity.

I know the saying may sound trivial, but hang in there a bit longer. Don't give up finding answers, because they are there. It just takes a good neuro. who is willing and smart enough to look at everything.

Take care and let us know how everything goes.

BTW--venting here is good. Many who have not gone through this will never get it, but folks on this board do.
Hey CJ,

First of all I want to tell you that EVERYONE on this board has felt the way you were feeling or still are. Getting diagnosed is the hardest thing. Trust me I have been having the same symptoms for around 6 years and was also told it was fibromyalgia (SP?) because my doctor wanted to shut me up. They have always told me my pain had to do with that (which they never even accurately checked me for) or my thyroid, even when my bloodwork came back fine. They basically treated me like I was imagining things. I have never imagined any of the pain I feel! I went to my 1st MRI and cried while they did it because I knew something was not right. It was me who finally said I can't live with this pain anymore, send me to a neuro and guess what?? I have lesions on my brain. I have not been diagnosed with MS but am on a medication given to MS patients and also see MS specialists. I had my repeat MRI on Monday and am awaiting the results to see if my 2nd is different then my 1st. Try everything you can to keep your insurance! Each MRI costs around $2000 and my medication each month for only 1 pill a day is $100 a month if I had no isurance. I wish you the best of luck, and make sure you know that if you need anything you can come and talk to everyone here. We all know how you feel! Believe me, I NEVER thought anyone knew how I felt until I came here.:D





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